World Parkinson’s Day was April 11, but building a greater awareness of the disease happens every day of the year. 

Parkinson's disease is a progressive, degenerative neurological condition that affects the control of body movements.

It causes trembling in the hands, arms, legs, jaw, and face; rigidity or stiffness of the limbs or trunk; slowness of body movements; and unstable posture and difficulty in walking.

The Brain Foundation says the disease occurs when nerve cells that normally produce dopamine in the brain gradually die. 

David was diagnosed with Parkinson’s disease in 2009 when he was 48.

His wife Jan is his carer, and still remembers the day well. 

David said it was a challenge to get everything organised when he was first diagnosed, such as filling out forms and other documents. 

Jan said Parkinson’s – coupled with restless legs – meant David did not sleep well. “The only way to relieve that is to get out of bed. He gets out of bed, but can’t get back in,” she said.

This means Jan must get out of bed to help David. Some nights, this occurs every 20 minutes.

Jan said a loss of cognitive function was the element that upset her husband the most.

Before being diagnosed with Parkinson’s disease, David was making large-scale, important decisions in his role as Horsham’s Sunnyside Lutheran Retirement Village chief executive, where he served for nine years. 

“He’s not able to make decisions or think clearly, or forgets what to say before he says it... just simple everyday issues,” Jan said.

“He was used to making big decisions and that’s frustrating for him because he can’t necessarily figure out what he is supposed to do or what he is supposed to say.” 

Jan said becoming her husband’s carer was a big change for her.

She said people with Parkinson’s disease were susceptible to falls, something Jan tries to prevent as much as possible so David does not injure himself.

“Some days are really good and other days are not so good,” she said. 

“There are challenges around falls and then just general day-to-day functioning.” 

Jan said the couple had support from a carer through the National Disability Insurance Scheme.

The carer helps with everyday activities and takes David to the gym for physiotherapy. 

David said the stage he was at with Parkinson’s disease required a large amount of carer support. 

“Jan works three and a half days of the week, so we needed to talk to the provider of the care services about arranging some suitable care workers,” he said. 

“It’s been an interesting experience going through all of the things we have to go through. 

“We have to give them credit though – they are some very professional people who do the work. It’s very important.”

Jan said David completed gym work to help with his physical health.

“Your body gets very rigid and stiff, so the gym helps with balance, which then helps avoid falls,” she said. 

Parkinson’s disease has also affected David’s concentration.

Jan said David used to love reading a book every day, but had struggled to do that in recent years.

“He might just even drop off to sleep,” she said. 

David said the Horsham Parkinson’s disease support group had helped him through his journey. 

“The support group is very helpful. Everyone is going through it in different ways – there are different components of the disease,” he said. 

The effect on concentration has also meant David has been unable to drive for almost three years.

“He gets quite frustrated because he thinks, ‘why can’t I do all these things I used to be able to do?’,” Jan said. 

“It’s a difficult road and he has had it for nine years now. People often don’t get diagnosed right away because it can look like other complaints, so it’s not until you go to a neurologist to have specific tests you find out.” 

David wears a pump that is directly infused into his small intestines, which gives him a dopamine promoter medication throughout the day. 

Parkinson’s disease is more common in men, and people with hereditary links to Parkinson’s also have a greater chance on getting the disease. David’s father also had Parkinson’s disease. 

“That’s how we got onto it, because I knew the symptoms, what the condition looked like and what it presents as,” Jan said. 

“That’s probably why we picked it up sooner but it is hereditary in our line I think… his uncle had it, his dad has it, his younger brother has it and another uncle has just been diagnosed.” 

Jan said that knowing Parkinson’s disease was in the family made her wonder if it might affect their two adult children in the future. 

“There is a gene test now so you can get tested to see if you have the gene for Parkinson’s, but you can have the gene and never get the disease,” she said. 

“Doctors are trying to find out what actually sets it off. I told our kids if they want to get tested they can but if they do get tested and find they have the gene, do you worry your whole life?”